Program helps parents of kids with rare disorders

NEW YORK (Reuters Health) - Raising a child with a rare disorder or disability can be highly stressful, but even a few educational sessions can help parents better cope, a new study suggests.

Swedish researchers found that a five-day program on dealing with the everyday problems of managing a child's medical condition helped reduce some of the stresses parents often reported.

For the study, published in the Journal of Advanced Nursing, Dr. Lotta Dellve of Gothenburg University and her colleagues followed 244 parents (136 mothers and 108 fathers) of children with certain relatively uncommon conditions -- including heart defects requiring a transplant, and genetic disorders that impair mental and physical functioning, such as Prader-Willi syndrome and Rett syndrome.

The parents took part in a program designed to help them with everyday problems of managing their child's condition. The idea, according to the researchers, was to "empower" parents with better knowledge of the disorder and greater confidence in their ability to handle it.

All parents attended five days of small-group sessions led by nurses, teachers and social workers.

At the start of the study, the researchers found, parents reported fairly high levels of stress and emotional strain. Mothers were generally under more strain than fathers, and this was especially true of single mothers.

Six months and one year after the program, mothers reported improvements in their levels of fatigue and felt that they were getting more support from their husbands. Full-time working mothers also said they were under less physical strain.

Among fathers, there were improvements in their ability to cope and follow professional advice for managing their children's condition.

"Both mothers and fathers felt that the (program) helped them to improve their knowledge and coping strategies, and mother felt that it also improved the level of social support they received," Dellve said in a statement.

The program appeared to do the most for fathers and full-time working parents, who, according to the researchers, felt less stress from "incompetence," or a feeling that they were unable to give their children what they needed.

"Our results," Dellve said, "underline the importance of professional teams working with mothers and fathers to improve their knowledge and skills when it comes to dealing with their child's illness."

SOURCE: Journal of Advanced Nursing, February 2006.